Saving Charlie Gard: Fight for terminally ill British child goes on

The parents of terminally ill Charlie Gard told USA TODAY on Sunday that they hope the courts will reverse course and allow their 11-month-old son to receive experimental treatment in the United States.

Another court hearing is scheduled for Monday in the controversial case that raises bioethical issues and caught the attention of President Trump and Pope Francis.

"What I think a lot of people can't get their head around is that we are not allowed to take our son from one hospital to another one to possibly save his life," the boy's father, Chris Gard, 32, said in an interview. 

"It's not just that we think we know best," added Charlie's mother, Connie Yates, 31. "There are other doctors in America and around the world now who think it is worth a chance. While Charlie's still fighting, we are still fighting."

The couple spoke shortly after delivering a petition with 350,000 signatures to Great Ormond Street Hospital, where Charlie has been treated since October, calling on doctors to allow him to seek treatment abroad.

Gard described the outpouring of international support for his son as "amazing" and said it was "keeping them going." He said the couple aren't particularly strong people, but "what is strong is our love for that little boy." 

Charlie has severe brain damage and needs a ventilator to breathe. He is blind and deaf, unable to move without assistance and has frequent seizures. His life-support was due to be switched off June 30, but that action was delayed so his parents could spend more time with him.

In Britain, unlike in the United States, if there is a dispute between parents and doctors over how to treat a patient, the courts, not the family, have the final say about how to proceed.

"We have a different perspective, or at least emphasis, on things like autonomy and the proper role of parents in decision-making for their children," said G. Kevin Donovan, an expert on bio-medical ethics and a professor at Georgetown University Medical School in Washington, D.C. 

"Physicians in the U.S. would argue that even though little Charlie has a grim prognosis, there might some hope or benefit by intervening with experimental therapy," Donovan said.

A U.S.-based neurologist, identified in legal documents only as Dr. I because of court restrictions, is willing to try an experimental treatment that he admits is unlikely to work on Charlie and has not been tested — even on animals.

But several court rulings have prevented the parents from taking up the offer because the boy's British doctors don't think the therapy would improve his quality of life and could cause him further pain.

The parents have raised more than $1.6 million to have Charlie treated in the U.S. or another country.

Britain's High Court ruled in April that Charlie's doctors agreed that the child should be taken off life support systems and given "palliative care only and that he should be allowed to die peacefully and with dignity."

 

In his ruling, Justice Nicholas Francis cited testimony from Dr I, who conceded that Charlie is unlikely to improve with the experimental therapy, but he would still treat the boy.

The case gets another hearing in the High Court on Monday after the hospital asked it to consider new evidence submitted by Italian researchers about Charlie's disease and whether it might respond to Dr. I's "nucleoside therapy." 

The move comes a week after Charlie's case was thrust into the global spotlight when Trump tweeted that if the U.S. could help, "we would be delighted to do so." And the pope said the Vatican's hospital was also willing to take the boy. Francis said he hoped Charlie's parents would be allowed to "care for their child until the end." 

U.S. Reps. Brad Wenstrup, R-Ohio, and Trent Franks, R-Ariz., said they will introduce a bill this week in the House of Representatives, calling for Charlie and his parents to be given U.S. residence status so their son can receive treatment. 

On Sunday, a small demonstration was held near the hospital as the Gards delivered the petition that said Charlie "deserves a chance" to receive treatment that could improve his quality of life. The parents also disputed some of the hospital's findings about the severity of Charlie's brain damage, saying he was able to open his eyes in June at a picnic on the hospital's roof.

"This is not an American issue. This is not a European issue. It's not a political issue.  ... This is a human rights issue and a parental rights issue," said Patrick Mahoney, lead pastor of the Church on the Hill in Washington, D.C., who was in London to support Charlie's family and helped organize the petition.

Also attending was Bobby Schindler, whose sister Terri Schiavo of Florida died in 2005 after a lengthy and public right-to-die legal case. Schiavo's husband won a legal battle against her family to remove her from life support after she had a heart attack that left her brain dead at age 26. 

"I know what it's like to go through the constant day-to-day roller coaster ride that the Gard's are experiencing right now," said Schindler, an advocate for medically vulnerable people. "With the courts, with the different rulings, with not knowing whether their son is going to live or die." 

© 2017 USATODAY.COM


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